This is a story about a teen girl chasing a dream to be a singer, despite being unable to talk…

The first time she heard a voice being used as an instrument, was the day she would mark as euphoric. How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself. Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard. She knew with determination, practice and patience she could, at least, try. A challenge she embraced and will tackle greedily.

Nothing vanishes without questioning Merlin’s participation in the disappearance. He never admits to wrong-doing, but instead greets the attention with purrs. Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.

Merlin is unusual because he plays fetch and follows his favorite humans around with devotion. If you don’t like cats it is because you have not yet met our Merlin.

But if you ever lose something, don’t blame Merlin. He had nothing to do with it.

Emma typed this post yesterday and asked that I post it on the blog today. Her typed words are in italics. This post began with Emma writing, “How about a teen girl post on the blog where I see if I can find girls that want to participate in a chat?” (She asked that I begin this post with the above sentence.)

Calling all teen girls.
Are you Autistic?
Are you a female?
Are you an Autistic female in your teens?

If so, I hope that I have your attention.
It is a time full of confusion with many unanswered questions.
You might be fearful, curious, and feeling alone.

Let’s find each other.

Now Mom helps.

My help will come in the form of setting up a private group, probably on Facebook, if one or more teenage Autistic girls show an interest. This group has to be a place where everyone feels safe to say anything they want without fear of being quoted or spoken of outside the group. If anyone knows a teenage Autistic girl who might like to be a part of this project, please reach out to Emma either here in the comments or privately through email: emmashopeblog@gmail.com or on Emma’s Hope Book FaceBook Page where you can send a direct message.

We treat others with care and feel the joy that comes with that. We treat others harshly and then pain is felt by both.

Problems arise when people take pleasure in other’s pain. Words cause joy, but also can cause pain.

Better to sing and dance!

This is what Emma wrote this morning in answer to my question, “What do you want to blog about this morning?”

We have been studying gene mutation, evolution, Darwin and how species adapt to their environment. We have also just finished reading Romeo and Juliet. I see the influence of all of these topics as well as Emma’s own unique and exquisitely compassionate take on this world and life.

Ariane: What should we start our day with? German, a blog post, general writing, fiction, poetry or something else?

Emma: Just start with blog post.

A: What would you like to post about this morning?

Emma: How about the topic: Knowing many things, but having no one believe you are able to understand.

Ariane: This is a great topic! Do you want me to say anything or keep quiet so you can continue?

Emma: I will continue.

For many years this was the title of my life. It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of. The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness. Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.

Ariane: Wow, Emma, that’s really beautiful. What else?

Emma: You can add commentary now.

Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…

I am always struck by Emma’s words. It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over. This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.

“Nonsensical searing memory words…” I so want to know more about this. Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center? A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself? I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct. I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought. I’ve written about these bridges before ‘here‘. Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.

“… that no one understood the significance of.” I will ask her about this later. She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding. “…beams of brilliant light shouting through the dreary darkness.” Who among us does not want that feeling for those we love? Is this not what love is? Connection with another?

“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught. This might help the misunderstood.”

Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand. We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years. Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning. To say words, to write words only to be told you do not understand metaphor. To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.

End of commentary.

Ariane: What sort of image should we put with this post?

Emma: How about a photo of the two of us. Daddy can take it.

Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others. What do you think?

“You get to write about thinking feelings are facts,” Emma typed this morning. Then she smiled at me, got up, and walked away.

Eight months into this whole homeschooling thing and I’m just now starting to figure out how I can work this blog into our busy schedule. Emma wrote the other day that she would write a blog post once a week or, she thoughtfully added, “suggest topic for you to write about.” Then last week she wondered if she might ask questions that she hoped readers would want to respond to. The first of that series with all the wonderfully considerate, insightful and thoughtful comments and answers to her questions from readers, can be read ‘here.’

My goal is to carve out time Tuesday and Thursday to post something on this blog. Only time will show how well I do with this goal.

But for today, Emma has given me an assignment. “You get to write about thinking feelings are facts.” When she typed this sentence I immediately thought of “the mean voice.” This is the voice in my head whose sole purpose seems to be to give a running critique of everything I’m doing and why it’s all wrong. The Voice is harsh and can be very, very cruel. It will say things to me that I would never say aloud to another human being, no matter how angry I might be. The Voice feels real, it says things in a matter-of-fact way that makes me think the words it is saying are true. When I believe The Voice all joy is deleted. Any glimmer of hope is snuffed out. The Voice tells me I suck and whatever I’m doing sucks.

But I’ve come to understand that The Voice is not to be listened to, which is easier thought than done. It does not tell me the truth, it is mean and it says things that are not based in fact. I call it “The Voice” but in fact, it is fear. It is hopelessness. It is anger. It is a whole medley of emotions, some of which I cannot even identify or untangle to identify. The Voice is feelings and it is most certainly not “fact”.

Feelings are not facts. Feelings are not facts. This is something someone said to me early on in my addiction recovery. It was one of those “slogans” that at the time made no sense to me. Well of course feelings aren’t facts, I remember thinking to myself. Anyone knows that. They’re feelings. But what I didn’t know then and what I still forget now, is that when I’m upset or scared or angry, the conclusions I come to as a result of having those feelings are also not facts. They are feelings and the two are very, very different.

So for example, if I’m afraid to do something that I really want to do, like write this book that Emma and I are working on together, I feel tremendous fear. The Voice kicks in and will say things like, “What the hell are you doing? Why are you even trying to do this? The last thing the world needs is a book written, even co-written by you. Who are you to write about your experience with this? Who do you think you are? No one wants to read what you think. You think this will be helpful to someone else? What kind of narcissistic, self-involved crap is that? You can’t do this. You suck.” If that doesn’t stop me in my tracks The Voice amps it up a notch and gets even more vicious.

People have suggested imagining a volume control dial and mentally visualizing turning the volume down. Others have suggested saying, Thank you for your thoughts and then doing the thing I’m terrified of doing anyway. Others have said – just don’t listen to it or don’t believe it. But none of that has had much impact or made a difference. Logically I know this voice isn’t real. It’s in my head. I know it isn’t some divine, all-knowing voice. I know it is mean. I know all these things, but when the emotions come it is like being pulled under and the energy it takes to keep my head above the water, the energy it takes to just breathe is exhausting and sometimes, most of the time, I don’t feel able to fight it.

When I was an active addict The Voice told me to go and eat. Go ahead it would say. Oh go on, you deserve it, The Voice would encourage. You’ve had a tough day, give yourself a treat, eat a dozen doughnuts. If I fought it, it only got louder and more insistent. Oh go on, GO ON! And I would. I couldn’t refuse. I felt out of control and helpless. I felt unable to stop. Now, almost two decades later, I know to “out” that particular voice. I know to tell on it. The Voice doesn’t like that. And saying to another human being who understands, who can identify, who can say – oh yeah… wow, I so get that – is often all it takes now to give me that moment of grace so that I can pull away and not do that thing that will hurt me, the thing that it’s telling me to do.

While The Voice is usually no longer the boss of me when it comes to food and compulsive over-eating, it has never completely gone away. It crops up when I least expect it. It tells me things about myself that make me feel awful. It makes me believe it’s telling me THE TRUTH. I’m fifty four years old and I still find myself believing The Voice, not about food and eating, but about other things, healthy things I want to do or accomplish. There’s another slogan used in addiction recovery – Progress not perfection. And I am making progress, but it is very, very slow. And to be honest, far slower than I’d like. But then if I gauge myself from where I once was, the progress has been nothing short of miraculous, so maybe the next post will be about – progress, not perfection! Unless Emma has another idea, that is…

I’m turning Emma’s topic over to all of you – “…write about thinking feelings are facts.”

My friend Bridget wasn’t feeling great. She felt off-balance and couldn’t walk and it was making it difficult for her to talk. And then she told me the carpeting made her dizzy. I hadn’t noticed the carpeting, but when she said this to me, I realized the pattern of the carpet was like an op-art nightmare, in sharp contrasting hues, the repetitive pattern was eye-catching and I suddenly wondered how I could have blocked it out. But, you see, I had. The carpet wasn’t a problem until she mentioned it and then I couldn’t not see it. In addition, there was a plexiglass barrier that gave the sensation of being in an infinity pool, without any of the relaxation involved. It was as though the carpeting spilled over the edge and disappeared into an abyss. It was disconcerting and even frightening.

I held out the crook of my arm, the way a blind man in New York City taught me to do, years ago. A stranger, he’d asked if I could help him cross a busy intersection. At the time I was carrying my son in a Kelty pack on my back and had my then infant daughter in a snuggly. When I offered my hand to the man, he told me it was easier for him if I crooked my arm and he then held that, it was more stable, but also gave him the ability to control his own movement more. Bridget took my arm and we were able to make our way to the elevators without mishap.

It was like pain, you don’t realize how awful it is until it’s gone, and then you’re filled with indescribable relief that makes you hyper aware and surprised by just how bad the pain had been. Afterwards you wonder how you managed it. Realizations are like that. Once you have them they’re impossible to undo or un-think or un-feel. This is how it is with autism too.

A few months ago I was waiting for the cashier to ring up my groceries. Suddenly a load bang sounded. Without meaning to I jumped and turned toward the sound. It was another cashier smacking a paper bag open. She was smiling and the cashier next to her did the same thing. Other cashiers began to laugh and followed by banging their bags open. I was furious. The noise felt intolerable. I wondered what I might say to make them stop. I went through various scenarios in my mind, from yelling obscenities, to self-righteous indignation, to calling the manager. And then they stopped. The deafening sound that felt like a physical assault ended and I realized I’d been holding my breath.

As I walked home with my groceries I thought about how angry I’d gotten and how my body froze and then I thought about how awful it would be if I was assaulted, bombarded with intolerable sounds all the time or lighting that had a similar effect and suddenly, very suddenly, I understood something I had not understood before. I understood what people meant when they suggested that sensory issues can affect one’s actions, or as they say when referring to autism – how sensory issues can result in “behaviors”.

Had the banging noise continued in the grocery store I would have said something, and it would not have been kind or thoughtful or restrained. I would have had “behaviors” as a direct result of that awful noise. Had someone told me to calm down I would have been even more furious. My actions would most certainly have been viewed as over reacting or needlessly extreme.

Had I not been present when my friend Bridget told me how awful she felt and that she needed to sit down for a second and then told me why, I would not have noticed the awful carpeting nor would I have understood how the pattern of a carpet could disrupt one’s equilibrium so much so that one might lose the ability to speak. These are the things I am learning. These are the things that make the difference between understanding, and maybe even being able to do something helpful and not.

This was what Emma typed in response to my question, what should we write about on the blog today?

Emma proposed making one blog entry a week, possibly asking for readers to answer some of her questions, but before we could continue, she had a few concerns.

“Would thinking about stressful times cause upset?” she typed.

I said that it might, but we could put a trigger warning above with the topic so that if the topic was something specific, people would be warned and could stop reading. As I said this to her I marveled at her endless compassion and concern for other people’s feelings. Then I said I believed that sometimes it can be helpful to know you aren’t alone in feeling and thinking things that you don’t necessarily know others feel and think, at least this has been my experience.

We discussed the experience of going through puberty and how adults will often talk about their children and what they believe they are going through, but not about their own experience of going through puberty. “Maybe we should ask people to share their memory of puberty and what was the most difficult part about that period of their life?” I suggested.

Emma wrote, “You can ask and please say that if this question causes stress to not answer and next week I will ask a fun question.”

“That is such a thoughtful and kind thing to say, Emma,” I told her.

Before we ask for other people to share their experiences with either of these questions, Emma and I asked Richard to talk about “actions taken that get responses you don’t want.”

Richard said, “I put work out into the world, like my book and I want people to enjoy it, but some people say all kinds of nasty things, or let’s say I wrote a blog post and my intention is to be helpful to Autistic people and advocate for them, but because I’m not Autistic and I am highly opinionated, maybe I write things that are actually offensive to the very people I’ve meant to help.”

I asked Richard if this had really happened to him or if the last part was hypothetical.

“It’s hypothetical, but I certainly am capable of doing something like that. People can do all kinds of things with good intentions that don’t get great responses. To me the question is – what if you do things that you think are going to be helpful to yourself and other people and they aren’t and they aren’t appreciated either.”

I told Emma I would write about my experience with both these questions, so beginning with the first – actions taken that get responses you don’t want.

Saying something that is taken in a way I didn’t mean, particularly if it causes upset, anger or comes across as offensive. There have been times when I’ve said something and not realized it was offensive until much later, but there have been other times when I’ve said something or asked a question and it’s been taken as meaning more than simply information gathering.

Puberty…

One of the things I really love about this question is that it’s one of those topics people don’t often talk about, at least not with any personal specifics unless it’s about someone else (often without that person’s permission) or in small groups. So here’s the trigger warning – if the topic of puberty causes you stress, stop reading, otherwise, please join in and share a memory or an experience of going through puberty. What was it like? What was most challenging? Please keep this about your own experience. If you want to remain anonymous, you can always send your comment to the blog email address: emmashopeblog@gmail.com or you can DM us on Emma’s Hope Book Facebook page.

We asked Richard to start things off: (insert smiley face here)

“It was the late sixties and early seventies and I became obsessed with – when will I have cool looking sideburns? – I remember doing drawings of sideburns and imagining what my sideburns could look like. I remember a lot of thinking about sideburns. They were emblematic of becoming a man.”

Okay, so I can’t really ask readers to share if I’m not willing to do the same, so here goes:

One of the more troubling memories I have of puberty was when I began to develop breasts and wanting to have them because most of the girls in my class already did and I was taunted by the boys at my school for not having any breasts. They would yell, “hey flatsy!” at me when they passed me in the hallway or whisper it to me during recess.

But I also hated that I was developing them. I had both feelings at once. There was shame about my body for not looking like the other girls, but also fear and shame that I would. I remember lying on my stomach at night, thinking this might limit or reduce their growth, only to put small wads of kleenex in my “training” bra to see what I would look like once I had them.

The larger issue, though I don’t think I was aware of it at the time, was the conflict of growing older and being excited by this, yet part of me wanted to stay a kid. And there was terror too. I was going to say “fear,” but it was more than fear, it was real terror at the idea of looking more adult like and less kid like, coupled with growing into a woman’s body and not liking the attention that elicited, which interestingly enough ties this answer to Emma’s first question about – “actions taken that get responses you don’t want” and very much encapsulates the essence of all that was problematic and difficult for me about puberty.

We’re turning these questions over to all of you now…

1. Actions taken that get responses you don’t want

2. Puberty – what was your experience or a memory of that time in your life?

There’s a young man, his name is Reginald. Everyone calls him Neli. He was on the high school wrestling team, wore a key on a chain around his neck, liked to hold three playing cards, loved his hoodie, repeated “television and movie lines ” and carried a “string that he runs through his fingers.” He was described as being shy and he liked going to his local library, which was two miles from his home. But one day none of that mattered. One day someone saw Neli sitting on the grass outside the library waiting for it to open. They called the police, reporting a “suspicious male, wearing a hoodie, possibly in possession of a gun.”

Neli is black.

Neli is also Autistic.

All the schools within a few miles of the library “went on lockdown.” SWAT teams were called in. That’s at least five schools, though one report said it was eight. Five schools. Eight schools. Lock down. SWAT team. All because an anonymous source said they saw someone suspicious sitting outside a library.

Suspicious could mean any number of things. Maybe it means someone who moves differently, keeps their head down, stares at their feet, doesn’t look you in the eye when you speak to them or doesn’t answer you at all when you ask them a question. Maybe they rock back and forth as they stand or sit, maybe it means they run a piece of string through their fingers or maybe they twirl it around and around the way my daughter does.

Neli was found, frisked and was unarmed. This is where the story should have ended. It is at this point that the situation should have been diffused. This is where the person who had the ability to calm things down could have, but chose not to. Maybe a parent, teacher, someone in the community who knew him, who could have vouched for him might have stepped in. Except the school resource officer who approached Neli and frisked him, did know him or at least had seen him at his high school. Whatever he knew or didn’t know wasn’t helpful as Neli’s life was about to get much, much worse. Neli was forced down over the hood of a car and told he was being taken in.

According to one report Neli cried, “I didn’t do anything wrong!” The arresting officer replied, “You don’t have to – Welcome to Stafford County.” Then he held a gun to Neli’s head and said, “I will blow your head off, nigger.” Neli fought back and in doing so the officer was hurt.

The jury deliberated for three days, found Neli guilty of “assaulting a police officer among other charges” and recommended a sentence of ten and a half years.

Ten and a half years.

The judge disagreed and sentenced Reginald Latson to two years in prison with time served. Except Reginald had done nothing wrong. Except that ONE YEAR in prison for seeming “suspicious” to someone is not justice.

“Suspicious” could mean someone who utters lines from a favorite movie or says something that is considered out of context or not relevant to the conversation. Or maybe suspicious means “not white” and when combined with any of these other things this results in people imagining there’s a weapon as well. Or maybe not being white is all it takes. But one thing is certain, being viewed “suspicious” and black and Autistic in today’s world can get you locked up, sentenced by a jury of your peers to ten and a half years, put in solitary confinement for most of your time in prison, and when you’re broken, when you give up the will to live and try to kill yourself, it’s enough reason to put you in a straight jacket, restrain you for hours, hours in a chair, and then slap you with another charge to make sure you never get out of prison.

The Bazelon Center wrote before sentencing last week:

This counterproductive and inhumane cycle continues with charges Latson is scheduled to face this week stemming from an altercation with a prison guard that occurred when he was being moved to a crisis cell while in psychiatric crisis and suicidal. There was no serious injury to anyone in this incident other than Latson, who was shot with a Taser and bound for hours in a restraint chair. Nonetheless, a new felony prosecution was initiated.

As I write this Neli has been sentenced to another six months in prison. This is beyond unacceptable. Neli should never have been charged to begin with. None of this should have happened. But it did.

A massive number of people have been working hard to gain Neli’s release. At this moment it could not be easier to do something that could help. If you only have a moment, sign this petition that my friend Kerima Cevik of the blog Intersected started.

Please. It literally takes less than 60 seconds to add your signature to this petition.

There were few things that led us more astray than the idea of autism being a developmental delay. Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan. (This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal. The private hell of regret is a cruel place to linger. Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.” In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell. Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood. Because people assumed she spoke what she intended and meant, she was penalized for the words she managed to utter. “Do you want to go fast or slow?” “Do you want to stop or go?” “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions. We assume she has no interest in engaging. We assume she doesn’t want to spend time with us. We assume she is “in her own world.” We make assumptions and we behave according to those mistaken beliefs. We believed each word was a milestone, paving the way for more language acquisition. We believed it made sense. Lay the foundation, create a strong base of words for more to follow… Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed. This idea of a developmental delay bled into every single aspect of her being. It was believed that her speech was delayed, as were her fine and gross motor skills. Therapies were structured around this concept. All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six? At the time we didn’t question any of this. Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know. We listened to the many professionals we consulted. Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter. It never once occurred to me that maybe, just maybe what she said was not what she intended to say. It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider. We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma. Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing. Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004. The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between. It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else. One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.

I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views. Thank you Emma for giving me permission to post our conversation.

Ariane: I thought we could begin the day by discussing who you might like to interview and about what topic?

Emma: Is the way here, thinking, knowing, and asking about another, helpful?

Ariane: I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life. Asking is a great way to understand another’s perspective. Who would you like to interview?

Emma: Using questions to sing truths meaningfully speaks to all.

Ariane: That’s so true! Music is a universal language that can transcend words.

Emma: What did those we cannot ask, say?

Ariane: Who are you thinking of, Emma?

Emma: Those who cannot speak and have no one who believes in their ability to communicate in other ways.

Ariane: Here’s the thing though, we can ask. We may not get an answer we understand, but we can still ask and I think that’s the beginning, right? We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.

Emma: Understanding that all human beings want connection is natural and fundamentally human.

Ariane: I agree. So Em, what was it like before you were able to type?

Emma: Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.

Ariane: Ah… can you tell me more?

Emma: Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.

Ariane: I imagine interviewing someone must be hard, even now that you can type. Would you say that’s true?

Emma: Sometimes ease is not an option.

Ariane: You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea. I’m sorry. What else should we do right now?

Emma: How about a conversation using music and no words?

Ariane: Great idea!

Some of the instruments Emma chose for us to use in our “conversation.”